Life Matters Media
Quality of life at the end of life

Let’s Stop Assuming All African-Americans Want The Same End Of Life Care

BY DANIEL GAITAN | daniel@lifemattersmedia.org

Medical providers must not treat African-Americans as a homologous group with similar religious beliefs and end of life care wishes, according to researcher Keisha Ray.

Ray, a postdoctoral research fellow at the McGovern Center for Humanities and Ethics in Houston, said the tendency of many physicians to avoid serious discussions about death and dying with minority patients has contributed to dearth of advance care planning.

Keisha Ray

Keisha Ray

Research shows terminally ill patients who participate in advance care planning receive less aggressive and invasive medical treatments near death, more goal-oriented care and higher quality of life at the end of life.

Ray spoke with Life Matters Media about a recent study by Dr. Justin Sanders calling for more authentic and “focused” communication between patients, their families and physicians.

Sanders’ study criticizes literature focused solely on encouraging African-Americans to complete formal advance directives such as a living will or power of attorney. Do you agree?

It highlights a problem, which is that many studies treat African-Americans as a conglomerate, homogenous, culturally singular group. This is because the diversity of African-Americans is ignored. The studies cited in this article treat African-Americans as if they are all religious or all mistrustful of health care providers.

This is true of some, but arguably not true of the majority of African-Americans. Americans as a whole are abandoning organized religion and newer generations of African-Americans are seeking more medical care at earlier stages of their illnesses.

Any reliable research on why more African-Americans aren’t completing advance directives must first think of African-Americans as a diverse group. But it must also be acknowledged that research that treats African-Americans as a homogenous group is reflective of how African-Americans are often treated by health care providers, which is also a barrier to more African-Americans completing advance directives.

Overall, African-Americans receive worse end of life care than whites and are far less likely to participate in advance care planning than whites. Many do end up opting for aggressive treatments near death with little chance of cure.

If there is some truth that African-Americans ask for more aggressive end of life care, we have to consider whether we truly desire more aggressive care, or if it’s just a matter of circumstances.

Perhaps if advance directives were explained to more African-Americans while they are in a position to make those decisions for themselves, when they find themselves incapacitated by illness, their families would not have to make sudden, under-pressure decisions.

When families have to make quick end of life decisions they may be less willing to turn down aggressive end of life care in fear that they are doing the wrong thing, or in fear that they are making a decision their family member or patient would not want. The need for quick decisions can also cause conflict between family members who are all trying to make end of life decisions for the patient, resulting in more aggressive care.

More African-Americans would complete advance directives and discuss end of life issues with their families if health care providers discussed this issues with patients early in their care. Health care providers should explain and discuss advance directives with patients before they are sick and in the event of severe illness, revisit advance directives.

Do people need an advance directive if they have repeated conversations about their end of life care wishes with family and friends?

It is important that health care providers stress that just speaking with families about end of life care is not enough. They should stress that although discussing end of life care with their families is better than not talking about it, if people truly want their lives to end on their own terms, an advance directive is the only way to do that.

– Comments have been edited for space.